The Power of "The Bigs"

A few days ago I went outside and caught a moment...

and it made me start to think about Curtis and his big brother and big sister and the part they play (and have played) in his life. I've been noticing it a lot more this summer--how much he wants to be around them and how much he talks about them when they aren't around. Yes, I know in my last post I talked about the sibling rivalry and how it was in full force--we are battling those issues, as well. But mostly he loves them and talks about them and follows them around constantly.

I can't really say that I understand the whole sibling thing because I'm an only child. I don't know what it feels like to have older brothers and sisters (or younger ones, for that matter). What is it like for a baby, and then a toddler, and then a young child to have older kids around all day? Do they learn faster? Talk at a younger age? Walk sooner? Or does it not matter? And what about for a special needs child? Are there any benefits for these kids to have an older sibling or siblings?

I remember when Curtis was tiny and we were still working our way around his diagnosis and trying to figure out when he would would walk/talk/do most things. One doctor told us, "Having older siblings will help. He'll want to do what they do. They will motivate him." I think he was right.

Curtis has had these two little people in his face--literally--pretty much every day since the day he was born. Always touching him, grabbing him, wanting to hold him. He rarely had a moment to himself. He was no doubt watching them, soaking in every moment, every movement, every word--all of it.

 

(big bro holding on to his left hand--I die)

 

(big sis--teaching him the first of many naughty tricks!)

Did watching them run down the halls give him the drive to want to start walking sooner than he may have without them around? Did hearing their non-stop chatter encourage him to try to speak even though it would take years of speech therapy before he'd be able to properly form words? I can't find any scientific info that says yay or nay, but I honestly think the answer, in our case, is yes. I also think he learned and wanted to jump, ride a tricycle, play on the computer (ugh), read books (yes, he is actually starting to identify a few sight words already! crazy!), swim, play soccer and t-ball in the backyard, and do many other things all because he saw his big brother and/or big sister do it. I will spare you the list of not-so-pleasant things they have taught him--equally as long, I might add. Would he have wanted to do these things and/or learned to do them without having an older sibling? Probably. In the case of walking and speaking--definitely. But I think having his big brother and big sister around sped the process along. 

Here's a short video--Curtis at age 2.5 playing at our local YMCA splash pad after a few days of convincing by big bro and big sis. As you can see...he loved it! Not sure Mom and Dad could have made it look quite as fun...

 There is not a day that goes by that Curtis doesn't want to play with his older brother or sister or at least do something they are doing. Like I said before, he is always asking about them and their whereabouts if they aren't home. This summer I have really noticed how much he relies on his siblings. He doesn't really ask me to play with him anymore--he wants one of them to play. I'm a last resort. I've also come to realize how much he depends on them and how much he actually wants them to be around! During the weeks when they were at camp, he really only put up with me until they got home. When it was time to pick them up, he would literally cheer in the car, "Yay! Yay! Yay!" And then five minutes later they'd be fighting, but still, the sentiment was there. He loves them!

Luckily we are at an age where Curtis' siblings will still tolerate playing with him most of the time. Big sis likes to play with him if she is boss (she is teacher/he is student or she is mommy/he is kid type of games). Big bro is happy to go outside to play or to build blocks/puzzles/Legos. There are, of course, times when they don't want him around, and he is genuinely saddened by that. Usually, I am a good substitute, but I won't always be. My hope is that he will have other friends to call upon when that time comes.

 For now, I'm just happy that Curtis has his Brub and Jo, as he calls them. They really are his everything. They were his first friends. They taught him how to play and be a kid in ways that I probably would not have if they weren't around. They get him to take risks, or shall I say, make him do things he doesn't necessarily want to do. But, as pissed off upset as I am when they make him do such things, I now realize it's OK...because I'd likely never make him do those things had they not been around! Sometimes Curtis needs to take risks and who better to lead the way than Brub and Jo? They really are perfect for him in so many ways. They snuggle him when he needs it, they cheer him on, they are not afraid to let him know if he is invading their personal space (everyone needs boundaries!), they praise his hard work.

  

 

But most of all, they love him. Unconditionally.

• Do you have a special needs kid with an older sib? If so, do you think that older sibling helped them in any way?

Summertime Blues

"I'm gonna raise a fuss, I'm gonna raise a holler...

Sometimes I wonder what I'm gonna do

But there ain't no cure for the summertime blues."

Forget the rest of the song, those three lines could be my anthem for this past week (and, mind you, the first week) of our summer break. Something has gone desperately wrong. We are off schedule. No, we really don't have a schedule. I think that is the problem. I'm hoping that is the problem, at least. We thrive on schedules here and without one, I think things have just fallen apart. Curtis has fallen apart. So have I. And things have gone cuckoo. I won't lie, I don't quite know what to do. 

Here is what is happening with Curtis: potty accidents (several a day some days), early morning wake-ups that involve getting into trouble (examples--letting the puppy out of her crate to run around the house, eating popsicles and a Snickers bar for breakfast, using scissors to puncture holes in juice boxes and letting said juice boxes spill all over the floor, pulling his lunch box out of the pantry then pouring water inside it), temper tantrums, screaming fits, telling me "no!" constantly, and fighting with his older brother and sister all day long. He even told me he hated me the other day. So sad. 

Summertime Blues, yo. I've got 'em.

It's been exhausting. And frustrating. And upsetting in the sense that I don't really know what is going on or how to fix it without sending him back to school and getting him back in his routine--which is not an option until the third week of August. The fact is, he won't have a set routine this summer. It's just not going to happen! We have summer camps for big bro and big sis for a few weeks and a family vacation later in July and then a few weeks of just nothingness before heading back to school. No set schedule. How are we going to deal?

All last week I kind of just tried to take deep breaths and cross my fingers that things would situate themselves. I'm trying to be that person that lets things roll of my back more. I'm a stress-case by nature and, frankly, I'm kind of over it. The stress, that is. I want to be mellow. People (my mom, husband) tell me to relax more. "Chill out. It will work out, don't worry about it. He'll figure it out. You'll figure it out." Yeah, guess what? It didn't work. And I really can't deal with another week, or an entire summer, of Curtis in la-la-land. Having that feeling of him progressing and doing so amazingly well at the end of his school year only to then have a week like we just had SUCKS. And I don't know if a non-special needs parent or if my mom or even my own husband can even understand what it feels like to have Curtis acting this way and for him to be back into the thing of peeing his pants sometimes 3-4 times a day! He's 5! And two weeks ago, he wasn't doing this! So, yeah, it's upsetting and the deep breaths aren't cutting it. I feel like a huge parenting failure. It wasn't a good week.

So what do I do? I actually asked his pediatrician about the accidents (we had an appt for 5 year check-up on Friday). I was worried at first with all these accidents--potty-training regression can be a sign of seizures. But he's showing no other signs--it's just one of those things that I'm always watching for. Anyhow, doc said not to worry unless any other signs start to pop up. He thinks he's just being lazy and that I need to treat him like he's potty training again (yay!) I have to start bringing him to the potty every half hour or so and just get back into the potty routine. I guess for some reason Curtis thought summer vacation also meant potty vacation. I don't know who gave him that lousy bit of false information! So I'm adding that to my daily to-do list. The good news is that I tried to ask him and take him a lot more this weekend and he did seem to do better, so that's good. 

What about the behavioral problems and the early morning wake-ups with the super fun household destruction? I think the behavior is tied to the early rising. I wish I had a solution for those 5:30am mornings. All of my kids have done it. All three are still up by 6:30am every morning. But 5:30? Too early. I feel like we've tried everything to get him to stay in bed an extra hour but if anyone has suggestions, I'd love to hear them. He does still nap during the day--anywhere from 1.5-2 hours on most days. (I will not get rid of his nap so don't try suggesting it. Without it, he's a mess and falls asleep at around 4 or 5:00pm for a nap, which is not OK.)

Routines in the summer--how do you do it? Does anyone have suggestions for that? Is it even possible with things like camps and vacations? Curtis does still have therapy once/week and swim lessons twice/week, so at least those are some consistencies in his routine. But he's really missing school already! And I thought I was looking forward to summer and a break from our typical routine, but now I'm thinking I was wrong.

HELP! I had a post I was working on that was going to be all about the fun things we had planned for summer and how I was going to work in some sneaky therapy-type goals into his summer play time. And then this happened. 

Someone give me my old kid back!

(He looks like this, if you happen to find him...cute little bugger...)

What A Day

June 20, 2013--This was a big day for our little guy. 

First off, he turned five. FIVE. 5. That's just the age where you no longer sound like a "little" kid anymore. I think he's officially a "big" kid. Is he? Because, crap...I'm not ready for that. Can I just pretend he's 3 forever? Not that I'm particularly fond of that age or anything--I am just not ready for him to grow up. 

Dude, he's 5. I can't take it.

So we didn't really have a big party for him this year. His bday fell during the last week of school for both him and his siblings, so it's a crazy busy week. We also decided to pull out the big guns and get the kid his own iPad mini for his birthday--a splurge that took the place of a big party. I let him have the choice between big party or iPad. He chose the iPad. Smart kid. We did have a tiny gathering with my parents and two family friends at a local pizza place the night before his birthday. Simple, simple, simple. The day of his birthday was also his last day of preschool. No cupcakes are allowed in the class (bummer), so I brought them right AFTER class. Smart mom. Curtis loved sharing cupcakes with all of his friends from preschool. I was happy that the parents let their kids stick around to grab one after school. We even passed out bubbles to the kids as a little "happy summer" gift. Curtis and a few of his friends (and big bro and big sis and grandma were all there, too) stayed for almost an hour to play on the playground after eating cupcakes. Curtis had a lot of fun and that's all that matters. 

With big sis at his tiny pizza party

All smiles while friends and family sing "happy birthday"

Preschool cupcakes--Curtis loves Curious George so I made these cupcake toppers

Like I said, today was his last day of preschool. I'm not quite sure he realizes this. He absolutely loves school and a few weeks ago I was trying to explain to him that he was going to be on summer break, which meant no school for 2 months. He started to cry. His older brother tried to tell him that summer break was fun and that no school was a good thing, but Curtis only got mad. Yeah, he really likes school that much. It was a bittersweet day walking away from the school today. I'm so proud of Curtis and all he's done--what a great year he's had! But it's definitely a bummer to go. I feel his pain! I'm excited for next year, though. He'll have most of the same kids in his class, and at least one of the same teachers. I know he's going to love it and I know he's going to learn more, make more new friends, and continue to improve on everything. Exciting things! Fun things!

I have to show you this. His preschool does the cutest thing--at the beginning of the year you give them an empty scrapbook. Throughout the year they fill it with photos and "artwork" and then return it to you on the last day of school. Since Curtis will be going to the same school next year, his teacher told me I can add pages to it and give them the same scrapbook next year. BAM! Preschool scrapbook--done. How cool is that?? Love it. 

 Pages from Curtis' preschool scrapbook

So we did have one bummer today and that was saying goodbye to Curtis' occupational therapist, who is moving to another state this summer. "Miss Joann" (she's actually a married mom of two, but we call her "miss" anyway) has been his OT at school for 2 years now and we just love her. Not only is she a great OT, but she is just one of those people that is always smiling. Always. She is also patient, and sweet, and loving, and everything that you would want in a therapist for your child. Not long after he started preschool, Curtis fell. He was just on the playground, walking across the blacktop area and somehow he tripped. He didn't get his hands down in time and his face hit the ground full force. He split his lip, hit his nose, and hit his forehead. It was Miss Joann that called me to let me know he was hurt and it was she who stayed with Curtis in the nurse's office and comforted him until I arrived. He was in pain, but he was also scared--he had a bad bloody nose and there was A LOT of blood all over the playground and all over him. When I got there, she was sitting with him, hugging him, showing him photos on her iPhone. She took care of him. She's really great and we are going to miss her terribly. Of course we wish her and her family the best. 

Curtis and Miss Joann

Between my baby turning 5, finishing up his last day of preschool, and having to say adios to one of the best therapists ever, I've been a big ball of emotions today. And I'm exhausted. And so ready for summer! I hope to get some fun summer activities planned and a maybe a few goals put in place for Curtis so he won't be so upset that he's out of school :)

The Best Part Wasn't Even In the IEP...

I just had Curtis' IEP meeting, as you recall, and it was awesome. The therapists and his teacher went on and on about how much progress he's made. How much he's grown. How amazed they are by him and all his achievements in this past year. No doubt, everything I wanted to hear. We all agreed that we are proud of him. Considering how unsure I was at the start of the school year, I was so happy to hear all of this at the meeting that concluded the year. He had reached several goals on his IEP.

Stepping aside from that for a minute, I want to talk about something really cool that happened this past weekend. Curtis went to a birthday party. I know what you're thinking--what? Big deal! Yeah, OK, so he's been to a bazillion birthday parties in his almost-5-years of life, but this one was different. What was so special about this birthday party was that it was all his own. And by that I mean his older siblings were not invited. In the past, Curtis has gone to parties for kids his age, but his siblings have also been invited because the kids having the party were family friends. The party this weekend was for a friend of Curtis' from preschool. In fact, it was for one of his best little buddies from school--a kid that he connected with from the beginning of the school year. And I can't even tell you how much fun it was to watch Curtis at this little pirate-themed party. Seeing him run around the park with all of his friends from preschool was like a dream come true for me. To help you understand, I'll have to take you back in time about 2 years, if you don't mind, to the first IEP meeting I had with the school district...

During that first meeting, they tried to convince me to sign Curtis up for his first year of preschool. He would, after all, be 3 years old by the start of the school year. But he was unprepared in so many ways. I won't go into too much detail with all the things I was worried about, but the fact that we hadn't started potty-training, his speech issues, and problems with balance were a few. All of those were issues they said they could "deal with" considering he was special needs. I didn't feel comfortable putting him in class, though, with a group of "average" three-year-olds that were potty-trained, had a good vocabulary, and could navigate a playground like nobody's business. And I didn't want him to be "dealt with", I wanted him to more or less slide right in. To fit in.

Besides all of this other stuff I was worried about, however, I had another concern. Curtis was lacking in social skills. Sure, he had older siblings, so he was always around other kids, but that wasn't the type of socializing he needed. He had never been part of a play group. He never went to toddler music class like my other kids. The time that should have been spent doing those things--the type of things that help socialize babies and toddlers--was instead spent mostly in therapy sessions. No other children were involved in those therapy sessions, it was me, Curtis, and the therapist. Even our trips to the park weren't spent interacting with other little kiddos. That time usually involved me shadowing him everywhere--to help him up and down every little step, to make sure he didn't trip, to be there just in case any other kid bumped into him and knocked him off balance. Park time wasn't social hour with other toddlers, it was Curtis and Mommy time. In fact, almost every hour of every day was Curtis and Mommy time. I never had a problem with this, I loved it, but I now realized it was a problem for Curtis. Before he started school, he needed to be around kids--lots of them! So in addition to the potty-training, I had to get him socialized.

Luckily, he's a pretty social kid! And I completely lucked out that our city's Park and Rec. Department had a PRE-preschool "Mommy-and-Me" class. I spoke to the teacher and she made an exception on the age limit for Curtis (max age was supposed to be around 3 yrs old, if I recall, and they let him go until he was around 3 1/2). It was perfect for him. He learned the basics of preschool: circle time, snack time, singing little songs, and how to share and play with kids his own age. It was great. Still--it was "Mommy and me". I was there to help with any problems. Always there.

Then I blinked and it was August 2012 and time for real preschool. Lo and behold, I still had my doubts. Had I done enough to get him ready? How would he feel being around all these new kids? Would the other kids like him and want to play with him? Would they notice things about him? That he couldn't or wouldn't go up and down the play structure like they did? That he walked different? That he couldn't run as fast or jump as high or ride a tricycle? If they did notice these things, would they ostracize him? Would he be an outcast? I spent hours (maybe days...OK, maybe the whole summer) worrying about these things. Wondering if the kids would accept him. Constantly going over and over all the different "worst case scenarios" in my mind. And do you know what? Here is what happened when those little 3 year old kids met Curtis and spent time getting to know him--nothing. And I mean that in the best way possible. All of those things I worried about and spent countless hours awake at night picturing in my mind--none of them happened. At least not that I am aware of. If a kid made fun of him or decided to not play with him because of his differences, no one ever told me about it. All I ever heard from Curtis was "my friend played with me today" and "I played on the swings with my friend" and "I have a new friend!" And all that I ever saw were smiles.

 So as I was sitting at this birthday party last weekend, looking at the kids from Curtis' class, it dawned on me. These kids in his preschool class--his very first "for reals" class EVER--are so special. Why? Because they all looked at my little boy and they loved him. They didn't see any differences. Or if they did, they didn't care. They saw a little boy that wanted to play and laugh and have fun, just like they did. He wanted to run and jump and look for bugs and play dress-up and ride tricycles and roar like a lion. He wanted to explore. He wanted to learn. Just like them. They have spent the last almost 10 months with him and they have helped him become a "regular" little boy. I have no doubt that they helped him get over his fear of slides. I also have no doubt that they are the reason he now tells me, "No, I want to do it all by myself, Mom!" They taught him what it was like to be a 3 or 4 year old (yes, temper tantrums and stubbornness included). During the recent IEP meeting, his teacher told me about one day when a little boy in the class was teaching Curtis how to stack magnetic blocks using two hands, because Curtis was trying (and failing) to do it with only one hand. She told me how patient the little boy was with him and how Curtis watched and listened and followed his lead. So these kids are even acting as therapists--haha! But, seriously...so damn amazing, I'm telling you. And they don't even realize it, these kids. How could they? They're just being kids. Playing. Having fun. When I picked Curtis up from school the other day, one of the little girls in his class yelled out to him, "Bye, Curtis! I love you!" I mean, give me a break. I almost lost it right there. They love him. And the feeling, I assure you, is mutual.

A few weeks ago, if you would have asked me how Curtis has changed or grown since starting preschool last August, I might have given you a list of things like this: he can now go down the slide on the playground, he can ride a tricycle, he can use scissors to cut a straight line, he can draw a "+" and a "o". Things that would show up as goals on an IEP, basically. 

Now I am thinking beyond that. Curtis now has his own friends. He gets invited to birthday parties--ones that his big brother and big sister don't get invited to. He has kids that get excited to see him at school and ask him if he wants to play the second he shows up. He has little girls that tell them that they love him (teehee). All of this...this is all big to him. It's made him a different kid. I know that all that other stuff--the pages and pages of stuff that is in the IEP--is crucial, don't get me wrong. But none of this cool social stuff that happened was even in the IEP. It just happened! And I think it's just as important. Curtis has grown and made progress simply by being around those adorable, sweet, fun little kiddos that he calls his friends. His buddies. 

They are awesome. I will never forget them for changing my boy. 

Photos from the party, you say? OK...

See that last photo? I think he's telling you he's going to be 5. Next week. Someone hand me a tissue, the waterworks are a-comin'...

Quick School Update

I just realized that some people aren't on Facebook and therefore don't get the little updates that I post on the All About Lefty Facebook page. 

In my last post, I talked about Curtis' upcoming IEP meeting. I was nervous. Always am with those things. Long story short--it went great. Curtis will be at the same preschool next year, but we will be bumping him up to the 4 year old class. He will continue with PT, OT, APE, and speech. The OT and speech will decrease to one half hour session/week instead of two half hour sessions. APE will remain two sessions/week. 

Sometime during January/February of 2014 we will be meeting to discuss his transition to kindergarten. Just the thought makes me anxious. I really want him to go to the same elementary school as his older siblings. I think that shouldn't be a problem. As long as he continues to do as well as he's been doing, there's no reason for him to go elsewhere. If something changes and he needs more assistance, there are other schools within the district that might be a better fit. Of course, we will pick the school that is best for him. Even though I know big bro and big sis would be devastated. They've wanted him at their school for so long. So this next year I'm really going to try my best to get Curtis physically and socially ready for that leap into kinder. For his sake and for big bro and big sis. Hoping we can make that happen! 

For now, we're just happy with where we're at for next year. 

Summer starts in two weeks. 

Curtis turns FIVE in 10 days.

WOW!

IEP, IFSP, PT, OT, LMNOP...RU KIDDING ME?

Short answer--no. I am not kidding you. When you have a kid with "issues", your life becomes a series of acronyms/initialisms/whatever the appropriate terminology is (I'm going to say acronym!) I've been thinking about them a lot lately because I have an IEP meeting this Friday. What is an IEP, you ask? I am here to answer that question! (And, OK, whenever I hear IEP, I automatically start singing, "You down with IEP? Yeah you know me! You down with IEP? Yeah you know me!") Sorry,  I was a teenager in the 90s, I can't help it.)

So I guess the question is--where do I start? I suppose I should start at the beginning--with the MRI. That was probably the one that started it all. Everyone probably knows what that stands for, right? MRI stands for Magnetic Resonance Imaging--it's a medical imaging technique used in radiology to visualize internal structures of the body in detail. Curtis had an MRI of his brain and it provided the neurologist with the information she needed for his diagnosis. The MRI set us up for the rest of the acronyms that would pretty much become part of our daily life. I'm going to try to list every stinkin' one that is or has been a part of Curtis' life. Hopefully I can remember them all! I'll try to give a brief definition (pulled from wikipedia or some other website) and then I'll let you know how it plays a part in Curtis' world. I'm going to try to go in chronological order, too. Let's see if I can manage that. 

Sound good? Here we go...

• PT--Physical Therapy. PT is a health care profession primarily concerned with the remediation of impairments and disabilities and the promotion of mobility, functional ability, quality of life and movement potential. We also call a physical therapist PT, as in "Curtis sees a PT 3 times a week" (and he really does see one that many times).
• AzEIP--Arizona Early Intervention Program. This was the program that we called when we first got the diagnosis. I found them on the internet (yes, the neurologist nor their office staff gave me any info--sad, right?) I had no idea what was going on or what to do and these two ladies came to my house, loved on Curtis, and explained everything.
• IFSP--Indivual Family Service Plan. This is a plan for special services for young children with developmental delays. The plan is made with the help of a service coordinator from an early intervention program. An IFSP only applies to children from birth to three years of age. Once a child turns 3, an IEP is put into place (I'll tell you what that is later). The IFSP includes goals and how such goals will be met--basically, which therapists will be assisting the child to meet the goals. Curtis had his first IFSP at 9 months old!
• OT--Occupational Therapy. OT is the use of treatments to develop, recover, or maintain the daily living and work skills of patients with a physical, mental or developmental condition. We also call an occupational therapist an OT, as in "Curtis sees an OT 3 times per week" (and he really does!)
• SLP--Speech Language Pathologist (otherwise known as a Speech Therapist). I couldn't find a good definition online, but I think everyone knows what a speech therapist does. Curtis sees his speech therapist twice a week when he goes to preschool. He is currently working on "consonant clusters" and the /k, g/ sounds. 
• CP--Cerebral Palsy. Curtis has spastic left hemiplegic cerebral palsy. Some people, especially on sites where this is any sort of chatting or talking about different types of CP, will further reduce it to LH for left hemiplegia or left-sided hemiplegia.
• SDRC--San Diego Regional Center. This is the organization in San Diego that helps people with developmental disabilities. I met with a service coordinator from SDRC when we first moved back to San Diego and they helped us get PT, OT, and speech services set up for Curtis. I had/have a lot of personal issues with this organization--I won't go into it in depth here. Our state is broke, which is sad, and I think the program has suffered greatly because of it. They are disorganized and dysfunctional to say the least. Unfortunate for those who need their help.
• EEG--Electroencephalography. OK, I could get all scientific on you, but this is basically the test they do to test for seizure activity in the brain. Curtis had his EEG at age 2.5. His results were negative for seizures, which was great news considering kids with cortical dysplasia usually have seizures. We're hoping it stays this way!
• CCS--California Children's Services. The California Children's Services (CCS) program provides diagnostic and treatment services, medical case management, and physical and occupational therapy services to children under age 21 years old with CCS-eligible medical conditions. Examples of CCS-eligible conditions include, but are not limited to, chronic medical conditions such as cystic fibrosis, hemophilia, cerebral palsy, muscular dystrophy, spina bifida, heart disease, cancer, traumatic injuries. At first, we were told we didn't qualify for these services since we had insurance and didn't meet the financial qualification. Alas, his medical diagnosis makes the financial requirement unnecessary. All these hoops, people! I'm telling you. It's complicated. You should see my files.
• MTU--Medical Therapy Unit. This is where a child receives their PT and/or OT services through CCS. There are usually several MTUs throughout a county and you are assigned to one based on your location. Ours is located about a half hour away. The drive it kind of a bummer and we are always late because it's in the morning not long after I have to get the other two kids off to school. Mornings are generally not great around here!
• IEP--Individualized Education Program.  An IEP defines the individualized objectives of a child who has been found with a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would. In all cases the IEP must be tailored to the individual student's needs as identified by the IEP evaluation process, and must especially help teachers and related service providers understand the student's disability and how the disability affects the learning process. Curtis' first IEP was put into place at age 3. This is when his services through SDRC were stopped and services through the school district began. The transfer process was scary and nerve-wracking. We had to go through a whole new set of evaluations, have meetings, set goals, sign stacks of paperwork, etc. We also had an unfortunate lapse in services. Curtis turned 3 in June and the school year didn't start until mid/late August. Legally SDRC didn't have to provide PT/OT/speech for him after June 19th, 2011. And they didn't. So we had to pay for 2 months of services out of pocket. Not cheap. Not fun. But definitely necessary.
• APE--Adaptive Physical Education. A carefully designed physical education instructional program for a learner with a disability. Basically, it's a half hour mini PE class for Curtis and a few other kiddos. They each have specific goals that they work towards. He has APE at school twice/week. I honestly don't know why they have this AND PT. I guess APE works more towards playground type goals. Whatever it is, I've watched sessions before and Curtis loves it. They play music and have fun. It's all good.
• IPP--Individual Program Planning. From the California Department of Developmental Services (DDS--ack another one!) website--the IPP "assists persons with developmental disabilities and their families to build their capacities and capabilities". This is some random meeting that I had with a new service coordinator from SDRC after our original coordinator was dumped (don't ask, she was no good). We did this when Curtis was 3--just after he started receiving services through the school district. I guess it was just a "re-grouping" sort of meeting. We were no longer getting services from them, so it wasn't an IFSP anymore. I don't know. Kind of useless.
• ESY--Extended School Year. In order to prevent any sort of regression, the school district provides some therapy services during part of the summer. This is called ESY. I think last summer Curtis had something like 3 weeks of OT and APE. No speech, which was a bummer. But something is better than nothing!
• FAPE--Free Appropriate Public Education. I honestly had no idea what this was until our IEP meeting last summer. Here's the definition: an educational program that is individualized to a specific child, designed to meet that child's unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit. Because of this, Curtis was allowed to be placed in the mainstream preschool class and be pulled out for his therapy sessions. It's confusing, but he still falls under special ed as he has an Orthopedic Impairment (OI--there's another one!). So Curtis' preschool was paid for by the school district, which was something I was not expecting. Now, this year, it could be something different. I was warned last year that since he's turning 5 this June, they might decide he's ready for kindergarten (he's not) and if I choose to keep him in preschool another year, it will be on my dime (that's fine with me). So we'll see how that goes--I'll know at the IEP meeting on Friday!

Now do you see what I mean about the craziness of all those acronyms/initials/whatnot? It's a lot to remember, right? And if you don't know what they mean and you have a child with disabilities--take my advice...you better learn them fast! Because, trust me, the doctors and therapists and teachers will all expect you to know them. Some people need to know more, some need to know less, and some are specific to certain states or areas, but some (like IEP, IFSP, PT, OT) are known by every parent of a child with a disability. It really is our second language. Get us in a room together and it is like we are speaking in code. Come to think of it, we should be able to count it as a language. You know, on an application or whatever. If someone could come up with a cool name for it, I think it should have a place down there right amongst French, Mandarin, Yiddish. Why not? For some of us, it's taken years to learn and perfect this language!

But, honestly, I wish my mind wasn't bogged down by all these letters and this 'secret language' sometimes. All of it makes my head mushy. And I probably wouldn't be thinking about these acronyms and all of this craziness if I wasn't worrying about this IEP meeting that's happening...tomorrow. If you know about those meetings, you know they are just--ugh. The meetings are pretty stressful, even if you are confident that things are going to be OK. And I am pretty confident about tomorrow. But you just really never know. I'm hoping things stay more or less status quo for Curtis for the coming school year. He's happy with his preschool and his therapy routine and my hope is that they are cool with things staying the way they are--only having him move up the next level of preschool, of course. I'm hoping they don't spring any big changes on me. So...

if you can--keep your fingers crossed for us for tomorrow!


And because I don't like blog posts without photos...

 This is my super fancy filing system for holding all of the acronyms in our life. This box holds all the IFSPs, IEPs, PT/OT/SLP evaluations, and various other shenanigans. All very important stuff. I refer to it all the time. I'm going to need another box soon.

 Curtis thought the box was pretty cool. "MOM! I see my name!" He proceeded to try to rip out all the files and mess up my whole system, but I distracted him with shiny things and candy :)

The Boy Who Grew Gills

I haven't really even been blogging long enough to include a link to the post about the swimming lesson mishap. You can just scroll down a bit to read about how they were, well, sort of a disaster for a while there. But, in case you don't want to scroll--here is the post.

Luckily, the swim instructors know what they are doing. Curtis' instructor has been in the water teaching kids for a long time, so when I approached her after his second lesson of full blown crying and asked her what I should do, I knew I would take her advice--whatever it was. What was the advice? To disappear. And that is what I did. The pool we go to has an area, right next to the pool (so I can still see everything and take a million photos and video) that is blocked off with some fencing. So, on that first day after she gave me my instructions, I just plopped Curtis in the pool, told him to have fun, and walked away. And guess what? He did fine. He did great, in fact. He had his best swimming lesson ever. And every lesson since then has been just as good, if not better. Now he doesn't want to get OUT of the pool! He actually cried yesterday because we had to LEAVE! He wanted ONE MORE TURN! Come on, kid, make up your mind! haha! Clearly, I'd rather have him crying because he loves it so much rather than screaming and shedding tears due to fear and the fact that he hates the water and wants to be out of the pool. So I'm OK with a little fussing over not wanting to get out of the pool. But only a little fussing. ;)

So, here it is--May 23, 2013--and I'm going to post a few videos of Curtis swimming. I can't believe it happened so fast. Mind you, we are still in the very early stages of swimming lessons! But I am honestly blown away by how quickly he picked this up. He is kicking his legs and moving his arms. The boy is on a mission! We are all so excited--big bro and big sis ask to see videos after every lesson (yes, they know I'm standing there, hiding, taking videos and photos--ha!)

Want to know what else is kinda cool? His OT told me the other day that his left hand seems like it's opening more and is more relaxed. She asked what we were doing differently and when I mentioned swimming her eyes lit up and she said, "I bet that's it! The swimming makes their body feel so different and he's moving that arm and hand around in the water so much!" How crazy is that? It could be totally unrelated--who knows--but both his OT and PT agree that swimming is great therapy for him. 

Here are a few videos for you of our little fish:

Make sure you put these videos on full screen mode since they were shot with my phone and from behind the secret fence so the quality isn't great. (Full screen mode is the little open box in the lower right-hand corner of the screen, just click on it and it will open the you tube thing up to full screen)--another tip is to click on the gear in the lower right corner and change the quality from "auto" to "480". This will make the picture MUCH clearer!

#1: Longer of the two videos, he's the one off to the right near the white thing on the side of the pool. He is swimming toward his instructor in the black baseball cap (and he disappears behind the blue milk crate for a second)

#2: Short video--again, make it full screen. You see him swimming to his instructor in the black cap.